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Labor of Love: Part 2

The moment I awoke from anesthesia with my very healthy son on my chest is something I will never forget—the gratitude I felt was overwhelming. I just felt so thankful that my body made this beautiful, healthy human and that my life was now extended through him.

Throughout my pregnancy I had frequent ECHOs, all of which were read as “stable.” Two months postpartum, my OBGYN said to me “see you next time.”

It was a rough recovery from the c-section, and I was so deconditioned from all the weeks of bed rest. I was in the midst of postpartum depression after the traumatic way my son arrived in the world, and the colic we battled. I had no idea having a newborn would be so demanding and I wasn’t prepared for how physically taxing it would be. I’m eternally grateful to my husband, family and friends who stayed with us those first few weeks to help me. When you’re an adult with CHD the phrase “it takes a village to raise a child” has a whole new meaning.

At four months postpartum I suddenly couldn’t make it up my stairs. I constantly felt short of breath, exhausted and weak. I approached several of my doctors, who all said “it’s exhausting being a new mom,” but I knew it was much more than motherhood that was getting me down.

After five months of testing, misdiagnoses and misread ECHOs by my “interested” cardiologist with good intentions, I finally traveled to see my new ACHD cardiologist and was diagnosed with postpartum dilated cardiomyopathy.

I was madly in love with my son and so the thought of leaving him from this devastating new diagnosis was overwhelming. We developed a treatment plan, with many new cardiology meds. It had been years since I had taken anything beyond a baby aspirin, and suddenly my life turned upside down with medication side effects that sometimes floored me.

I was forced to leave a job I loved in search of part-time work with a better schedule. I’m happy in my new job, but the realization that I’m not the same person I was before my pregnancy was very hard to accept.

Now, almost two years later, my heart is doing better, and I’m starting to feel better. Pregnancy and motherhood changes any woman, but when you have a pre-existing condition that is directly affected by the stress of pregnancy— your blood volume goes way up in pregnancy and that does put stress on the heart—it’s a whole new ballgame.

At 31 years old, I am facing a tubal ligation. The risks are too high for me now. As a very wise professional told me at the ACHA conference this past year, “You went into your pregnancy with one heart condition. You now have two heart conditions; a second pregnancy is strongly discouraged.”

My advice to any other ACHD women thinking of embarking upon the pregnancy journey would be to surround yourselves with a solid team of appropriate professionals and discuss a monitoring and treatment plan as soon as possible. I don’t know if my outcome would have been better had I done this, but I know I would have had a more stable emotional experience, and that solutions to complications would have come in a timelier manner. I’m trying to be nice here.

Also, make sure you have a strong support system to help you in the weeks following delivery. You’ll need help, and it’s OK.

Pregnancy is an amazing, wonderful and joyful time in any woman’s life, but for adults with CHD it is a risky endeavor that requires top care and monitoring.

I feel incredibly lucky to have my son. He is the light of my life and I still sit in awe at his existence. It isn’t fair to my son for me to take on the risk of pregnancy again, so if it’s meant to be we will add on to our family via adoption, but for now, I’m very content with our family of three.

Are you a woman with CHD who has been pregnant? What was your experience like and what advice do you have for other CHD women who may be contemplating pregnancy? Also, I don’t want to leave the men out—what emotional and physical challenges have you guys faced in fatherhood?

We were once babies who weren’t expected to live, and now not only do we live but some of us are giving life—either via pregnancy, surrogacy, or by providing life to adopted children. That is quite an amazing leap from the devastation and uncertainty our parents experienced when faced with our CHD diagnoses. It truly is a miracle.

Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at iPinion.us by clicking here.

I'm a 35 year old TOF patient. I was completely corrected at 4 and have had no issues since. I get yearly EKG's and now bi-yearly cardiac MRI's. I have slight regurgitation. I have 3 children ages 6.5, 5 and 2.5. Luckily, they are all healthy and so am I. I too was monitored at 33 weeks with an ECHO. My fetuses received an ECHO at 18 weeks. I have had no increase in heart size and everything is great! I didn't push when I delivered. My children were all removed with forceps. Even my oldest, who should have been an c-section, was turned twice and removed with forceps because my Dr.'s believed a c-section was too high risk for me. Unfortuantely I didn't get to read the first part of this, but I wish you all the luck in your future health!

By Nikki on 12/9/2011 11:09 AM

Re: Labor of Love: Part 2

I have TGA and went into pregnancy with no clue how hard it was going to be. And even when it was hard, I didn't really acknowledge how hard it truly was and how affected I was. I ended up giving birth to three children (and losing one pregnancy). The first was awful, but the second was actually pretty good. I was monitored more closely, and I was in better shape and health. The third was really tough. I was exhausted and depressed from the moment the pg test was positive. I never told anyone how severe my depression was, which was a huge mistake. The only ones who really knew were my children, since they were with me all day. I ended up delivering that baby almost a month early. It was tough (although all my deliveries were induced and assisted) and I had complications afterwards, like spinal headaches and hemorrhaging from unexpelled placenta. My doctor told me I needed to be done having kids and I knew he was right, but I had really wanted four and we were stalling on doing anything permanent, just in case after a break, I felt up to it again. I even had an MRI four months after my youngest was born and I had a stellar EF, especially for a TGA! Three months later, I had a spontaneous dissection of my right ventricle and almost died. I almost died again during the angiogram and I ended up with two stents and a traumatized husband. Needless to say, we've since taken permanent measures to prevent further pregnancies.

That was five years ago. I'm 37 and I feel pretty good now. And I would not trade any of my children for all the health in the world. But I also realize how incredibly fortunate I was that I didn't die. They don't know what caused the heart attack, but the only thing they can point to is the last pregnancy.

As far as advice for women, I agree completely that having a solid support system of both family and medical professionals is a must. The first OBGYN I saw (I was living in a small town) thought he could handle my condition, but he didn't even know what a transposition was! It was my ped. card. who set me straight and told me I had to be at a high-risk clinic. I wasn't all that young, but I was clearly pretty foolish. Also, knowing what I know now, I would encourage anyone to research how people with their CHD have handled pregnancy. I had never met anyone with my CHD before. It was only after my heart attack that I met someone in cardiac rehab who connected me with acha. It was so amazing to finally know I was not alone. And I'd had no idea how healthy I was comparatively. Even recently, I've met doctors who are absolutely amazed that I have three kids.

In some ways, I'm glad I didn't know how hard it would be - I might not have my kids. But being a mom to three kids is exhausting for me. I am not supermom at all. Living my life requires lots of support from family and friends. But it also provides lots of opportunities for thankfulness and gratitude! I'm not the same person at all that I was before children and especially before my heart attack. Personally, I think I'm a better person now. :)

Great post and I hope you stay healthy. I really hope that you just enjoy every moment with that baby! It's a total cliche, but they grow up so fast. I love a quote I heard somewhere that when living with children, the days feel like years, but the years go by like days. Good luck. :)

By Sarah on 12/9/2011 12:11 PM

Re: Labor of Love: Part 2

Great post. If you read my surrogacy story parts 1 & 2 on this blog, you'll see I also was advised against a second pregnancy. My advice to anyone with CHD thinking of kids is to discuss with your cardiologist early on, have the appropriate testing done beforehand and if you are given the OK to try for a pregnancy, to be seen by a high-risk OB -- preferably someone who has seen cardiac patients before and/or has a relationship with your cardiologist. When I had complications during my pregnancy, it was the coordinated care of my cardio & OB (as well as a slew of other docs, nurses, techs, etc!) that got me though. When I went through surrogacy, my cardiologist was still involved to make sure I'd be OK with the meds and the procedures required for that as well. Hope you stay well ! (As for Sarah's closing quote, the way I say it is that the years are short but the days can be very, very long!).

By Alissa on 12/9/2011 2:05 PM

Re: Labor of Love: Part 2

Just a reminder that guidelines state that ALL women with complex CHD such as tetralogy of Fallot and TGA should see an ACHD program before getting pregnant, and should only embark on a pregnancy under supervision of an ACHD team. This is true even for people who had early successful repair and are feeling just fine. I also had a pregnancy not under recommended care, also experienced some damage, and am less worndering if having been with experts in ACHD , as is recommended by all experts in the area, would have made a difference. Please contact the office if you are woman with CHD considering pregnancy and need help finding an ACHD team to work with you - we would love to help hook yo up.

By Amy Verstappen on 12/9/2011 6:26 PM

Re: Labor of Love: Part 2

I'm a 35 year old TOF patient. I was completely corrected at 4 and have had no issues since. I get yearly EKG's and now bi-yearly cardiac MRI's. I have slight regurgitation. I have 3 children ages 6.5, 5 and 2.5. Luckily, they are all healthy and so am I. I too was monitored at 33 weeks with an ECHO. My fetuses received an ECHO at 18 weeks. I have had no increase in heart size and everything is great! I didn't push when I delivered. My children were all removed with forceps. Even my oldest, who should have been an c-section, was turned twice and removed with forceps because my Dr.'s believed a c-section was too high risk for me. Unfortuantely I didn't get to read the first part of this, but I wish you all the luck in your future health!

By Nikki on 12/11/2011 5:37 PM

Re: Labor of Love: Part 2

I'm 27 and a TOF patient. I had my repair at 9 months and will have a new right valve put in soon. I've gone through 2 pregnacies. The first was monitered by my ped cardiologist. And an obgyn who "had high risk patients in the past." When I got pregnant the second time I changed to an achd specialist and a high risk obgn who sees TOF patients all the time. I learned from them that some of the things my obgn had done during my pregnancy were actually very dangerous for a chd patient. One being giving me "extra fluids after delivery to help my heart not work so hard." My second pregnancy was a better experience by far. I highly recommend any women with a chd to find a good achd team.

By Karla Deal on 12/12/2011 10:19 PM

Re: Labor of Love: Part 2

I am 37 years old with TOF and have a 10 year old healthy son. I was also blessed to have a great husband and support system during my whole pregancy. I have had one open heart surgery since he was born. I had to have my pulmonary valve replaced. I can not believe how much better I felt after the surgery. I do not plan on having another child as they say my heart may just get weaker. I am just thankful that he is healthy and I will enjoy raising him.

By Kristi on 12/31/2011 11:54 PM

Re: Labor of Love: Part 2

Im 32 and had a beautiful healthy boy 3 years ago. Apart from surgery at 6 weeks old, I never had another surgery. As I grew up i was treated like every body else, never treated any different because of my CHD. I didnt even know what was wrong with me and I didnt care. I used to go for annual appts to my cardiologist and every years was the same, " everything is fine, nothing has changed and come back next year". Then came the time to thing about having babies, myself and my husband were married 2 years and we were ready for a baby. As I never thought there was any problem and my Ped Cardiologist said to go ahead we started to try and thankfully got pregnant after 6 months trying.

The pregnancy was awful, I bled from 11 wks, I had constant palpatations, I one arriithmia episode, which scared the crap out of me. After dual care with card and ob, I had a scan and it was discovered that my baby wasnt growing, noting to do with my heart conditions,just another thing that was thrown in just to complicate things even more. My placenta was not feeding the baby, so I had to go on bed rest for 5 weeks in hospital (which I absolutely hated). He was finally delivered at 33wks and thank God, he was perfect just very small 3lbs. After another 6 weeks Cormac was brought home, with no complications due to his early arrival.

A few months after he was born I got another arrithmia and had to be shocked into regular heart rate, this was so scary. This happened another 2 times and I was put on cordarone meds which i hated being on. I had never, for as long as I can remember, taken any meds for my heart. I was devestated.

After my pregnancy, I never felt the same. I never got back to myself. I was constantly getting panac attacks, constant anxiety it is awful... Now 3 years after my pregnancy, my cardiologist has recommended that I have a fontan procedure, I am terrified about this as I had never thought I would ever had to go through this kind of thing.

this prodecure is usually carried out on children, but this had never been offered to me and so after an mri, I am suitable for the prodecure. I am so scared of dying and leaving my little family, I dont want my son growing up without a mammy. The docs have assured me that my life will be amazing after the surgery, that my blue colour with improve and that I will have much more energy which I great an all, but I really dont want to have to go through with it..

At the moment, I work full time and run around after my son and my husband. I feel great some days and feel "what the hell do I need surgery for??"

I am from Ireland, and there is absolutely no support system for ACHD here, I really feel really alone. My nurse specialist cannot provide anyone for me to talk to. I crave to talk to someone like me, as there is absolutely no person i know with this problem, all my friends are perfect. Im so happy I found this page, I feel a little bit normal and not a complete alien, there are people like me in this world.

If there is anyone out there who has had the fontan prodcedure, i would be delighted to hear from you and your experiences....

By Connie on 8/13/2012 8:09 AM

Re: Labor of Love: Part 2

You have come to the right place Connie and believe me, at ACHA you are not alone.

If you are not already a free ACHA member, I would encourage you to join. You will then have access to the Discussion Forum which is a wonderful place to get support from others who may have similar experiences as you in a safe environment.

You can also find an archived webinar about the Fontan presentation on the website, www.achaheart.org/library-education-materials/webinars.aspx. ACHA will also be hosting another Fontan webinar in January 2014. Additionally there are pdf's of Fontan presentations on both the 2008 and 2011 Conference webpages.

The US Guidelines for the care of the Adult Congenital Heart Disease (ACHD) patient say that all adults with complex congenital heart disease should be followed by an ACHD Program. ACHA publishes a Travel Directory of international ACHD programs and we do have one listed in Dublin. I don't know if you are aware of this program or not, but the information is availaible on the ACHA website at www.achaheart.org/Portals/0/pdf/TravelDirectory6thEdWeb.pdf.

As Member Services Manager at ACHA, I am happy to talk to you further and you can reach me at h2h@achaheart.org.

I am a 37 yo, soon to be 38, mother of an 18 mo old. I had my original repair in 1978. I was monitored by by ACHD dr as well as high risk ob/gyn and local ob/gyn's throughout my entire pregnancy. I had echos done on myself every trimester. Fetal echo done and all was normal. I delivered at tertiary care hospital, had epidural and normal labor, needed forceps delivery because his head was too big. My last trimester was pulmonary valve decompensated but went back to normal on my echo done after delivery. I was scheduled last week to have a Melody valve but the interventional cardio said my pressures looked great and my valve opening was 24mm, Melody only approved up to 22mm. I asked about future pregnancies and he said fine. My ACHD cardio still wants me to have surgery to fix my valve. The more informed you are and the healthier you are pre and during pregnancy makes a big difference on labor, delivery and how you do during pregnancy.